This is the story of Eleanor Brogan who was born in April 2006. She was born missing 90% of her small bowel and 20% of her large bowel. This made her "Short Gut" or "short bowel", hence the name of the blog. Currently she is being treated by Children's Hospital Boston. She was the 23rd child to go on the new lipid for TPN, called Omegaven. Which has saved her liver, kept her off the transplant list and we believe saved her life.

Thursday, May 25, 2006

Back to the old routine

After a few days of instability, Ellie is back to being to her old self today.

Her tests from earlier this week showed no 'C-diff' or Clostridium difficile, a nasty bactrerial infection that gives kids diarrhea and other problems and can be particularly tough to treat in some kids. There was a chance that she could have had this and that could have been the cause behind her bowels being so active on Sunday and Monday, but a culture shows otherwise. This is nice because while she was in the possible category she had contact restrictions on her which limited how much she could do outside of her room and also required her nurses to don robes, gloves and other gear when comign into the room to prevent the spread of the infection. All clear on c-diff is a good thing.

She is back to normal in other ways as well, spending a good portion of last night in the 'wide awake Ellie' mode, giving her mom a hard time through most of the night. abby is tired this morning but happy to have a perky little girl in her lap.

We are starting her on milk again today and going to try a slight increase in her feeding amounts. Last night when Abby held her she spent a long time 'rooting' or trying to find food and this seems like her way of saying that she is ready to start eating again. We'll see how it goes and adjust accordingly.

We are xpecting a visit from Bub, my college friend who lives west of Boston this morning. He is in need of a visual confirmation that Ellie is okay and we will make sure to get her up and around with him. Hopefully he will stay for unplugged time this PM and go out into the garden with us to see some sun.

I got my second renewal of my Children's Parental ID today. Normally they are good for two weeks at a time. When I told them that it was my second renewal, they told me that they hoped I wouldn't need a third and then offered the monthly renewal when I told them that we aren't going anywhere fast. It is amazing to me that everyone in the place seems to have drunk the same parental relations Kool-Aid. It seems to be based on these tenets: 1) Your kid will get out of here. 2) We hope that it happens sooner than later. 3) But while you are here, what can we do for you to make things easier? 4) You are in the best place in the world for your kid.

5 comments:

Though I've never met your wife, I hope she can take a bit of comfort in knowing that I am awake almost all night with my new (3 weeks old)daughter as well. She likes to sleep all day and party all night. I suppose we can just cross our fingers that they grow out of this nocturnal lifestyle before they're 16.

We made a good choice by not coming to Boston yesterday. I am coughing and wheezing like the old geezer I am.

We follow your ups and downs and experience small bits of what you must feel—elation, depression, joy, fear, love, anxiety, calm, all in the space of 24 hours. I don't know what in either of your backgrounds prepared you for this but you are showing us all the way to be.